Once again, Bob De Marco has posted a wonderful article on his blog, The Alzheimer’s Reading Room called Expectations of a person with Alzheimer’s, written by Carole B. Larkin. It begins with “One of the definitions of the word expectation is: a standard of conduct or performance expected by or of someone. We all have expectations of other individuals based upon the demeanor and behavior that they have shown us in the past. Yet, in day to day caregiving of a person with Alzheimer’s or another dementia, having expectations of that person can be either a blessing or a curse, and frequently both blessing and curse.”
I urge you to read the whole article and thank Carol for writing such an insightful piece about managing others’ expectations of people with dementia. Many people with dementia talk about the shock of the diagnosis, and then the horror of prognosis. Some refer to it as the turning point in their lives, a moment that is etched in our memories, just like 9/11 or the assination of J F Kennedy. We remember things like what the weather was like, what we were wearing; the words used to give us our diagnosis remains in our hazy memories are one crystal clear picture. For some of us it is a relief; at last there is an explanation for our changed memories and cognitive abilities, but we still have to face up to what the future now holds. For others diagnosis leads to disbelief; surely there is nothing wrong with us; surely it is not dementia, anything other than dementia! Research clearly says the second most feared disease for people under 65 is dementia (the first most feared is cancer), and the first most feared for the over 65 group is dementia. We cannot imagine we are anything like those people in nursing homes who don’t know who they are or who their families are? It is a time of deep trauma, a terrifying awareness of our new futures, of what lays ahead for our families. There are some who consider euthanasia – or suicide as it would have to be.
The thought of becoming too difficult for our loved ones to care for us, and of not remembering we have said things to them or done things with them is too humiliating to think about. The changes brought on by dementia are relentless, an ever-changing tide or ride, an ever decreasing reduction of our abilities. These may be difficult for the people who love and care for us, but they are also very difficult to live with for us. The pertinent point for me in the article I have highlighted today is this; “If you don’t EXPECT things from them, then you can’t be disappointed, angry, hurt, etc… when they don’t live up to your expectations! They are truly doing the best they can, given the disease they have.” As a person with dementia, I can almost guarantee people with dementia do not mean to lie, or hurt you, they truly are doing the best they can with the disease they have. As my dear husband says, he is the one who has to change to accommodate the changes in me – caused by the disease – not by me. He is still learning how to do this, and wasn’t very good at it in the beginning, but I am grateful he is willing to see the changes in me as part of the disease, and not me being difficult or unkind to him. Bob De Marco achieved it, and is a shining light for the people living alongside the people they love with dementia; thank you Bob.